Background Biobank participants often do not understand much of the information they are provided as part of the informed consent process, despite numerous attempts at simplifying consent forms and improving their readability. We report the first assessment of biobank enrollees’ comprehension under an "integrated consent” process, where patients were asked to enroll in a research biobank as part of their normal healthcare experience. A number of healthcare systems have implemented similar integrated consent processes for biobanking, but it is unknown how (...) much patients understand after enrolling under these conditions. Methods: We recruited patients who enrolled in a biobank while in a healthcare setting when receiving ordinary care. We assessed knowledge of consent materials using 11 true/false questions drawn from a well-known biobank knowledge test. After reviewing the results from 114 participants, we revised the consent form and repeated the knowledge assessment with 144 different participants. Results: Participants scored poorly on the knowledge test in both rounds, with no significant differences in overall scores or individual items between the rounds. In Phase 1, participants answered 53% of the questions correctly, 25% incorrectly, and 22% “I don’t know.” In Phase 2, participants answered 53% of questions correctly, 24% incorrectly, and 23% “I don’t know.” Participants scored particularly poorly on questions about data sharing and accessing medical records. Conclusions: Enrollees under an integrated consent model had significant misunderstandings that persisted despite an attempt to improve information specifically about those topics in a consent form. These results raise challenges for current approaches that attribute misunderstanding to overly complex consent forms. They also suggest that the pressures of the clinic may compound other problems with patient understanding of biobank consent. As health systems increasingly blend research and care, they may need to rethink their approach to educating patients about participation in a biobank. (shrink)

Genetic information is widely thought to pose unique risks of reidentifying individuals. Genetic data reveals a great deal about who we are and, the standard view holds, should consequently be treated differently from other types of data. Contrary to this view, we argue that the dangers of reidentification for genetic and nongenetic data—including health, financial, and consumer information—are more similar than has been recognized. Before different requirements are imposed around sharing genetic information, proponents of the standard view must show that (...) they are in fact necessary. We further argue that the similarities between genetic and nongenetic information have important implications for communicating risks during consent for health care and research. While patients and research participants need to be more aware of pervasive data‐sharing practices, consent forms are the wrong place to provide this education. Instead, health systems should engage with patients throughout patient care to educate them about data‐sharing practices. (shrink)

T. J. Smiley; XII.—Entailment and Deducibility, Proceedings of the Aristotelian Society, Volume 59, Issue 1, 1 June 1959, Pages 233–254, https://doi.org/10.1093.

Originally published: Oxford: Clarendon Press, 1932.

Recent highly publicized privacy breaches in health care and genomics research have led many to question whether current standards of data protection are adequate. Improvements in de-identification techniques, combined with pervasive data sharing, have increased the likelihood that external parties can track individuals across multiple databases. This paper focuses on the communication of identifiability risks in the process of obtaining consent for donation and research. Most ethical discussions of identifiability risks have focused on the severity of the risk and how (...) it might be mitigated, and what precisely is at stake in pervasive data sharing. However, there has been little discussion of whether and how to communicate the risk to potential donors. We review the ethical arguments behind favoring different types of risk communication in the consent process, and outline how identifiability concerns can be incorporated into either a detailed or simplified method of communicating risks during the consent process. (shrink)

Germany’s political and cultural past from ancient times through World War II has dimmed the legacy of its Enlightenment, which these days is far outshone by those of France and Scotland. In this book, Jim Reed clears the dust away from eighteenth-century Germany, bringing the likes of Kant, Goethe, Friedrich Schiller, and Gotthold Lessing into a coherent and focused beam that shines within European intellectual history and reasserts the important role of Germany’s Enlightenment. Reed looks closely at the arguments, achievements, (...) conflicts, and controversies of these major thinkers and how their development of a lucid and active liberal thinking matured in the late eighteenth century into an imaginative branching that ran through philosophy, theology, literature, historiography, science, and politics. He traces the various pathways of their thought and how one engendered another, from the principle of thinking for oneself to the development of a critical epistemology; from literature’s assessment of the past to the formulation of a poetic ideal of human development. Ultimately, Reed shows how the ideas of the German Enlightenment have proven their value in modern secular democracies and are still of great relevance—despite their frequent dismissal—to us in the twenty-first century. (shrink)

One of the many striking theses for which Virginia Held argues in How Terrorism Is Wrong is that terrorism is not necessarily morally wrong. In principle, she argues, terrorism can sometimes be permissible . Call this "the Non-necessity Thesis," or NNT. As so often in this deep and thought-provoking book, Held gives a powerful and illuminating argument to this thesis. The argument begins by asserting what we may call "the Violations Distribution Principle" : if we must have rights violations, then (...) a more equitable distribution of such violations is better than a less equitable . It then claims that this implies that "it is better to equalize rights violations in a transition to bring an end to rights violations than it is to subject a given group that has already suffered extensive rights violations to continued such violations" . But this in turn implies that where one group's rights are severely and systematically violated— say, by an oppression, in which their right to personal safety is systematically violated—and another group's rights are not so violated, then a transition which involves a sharing of proportionate rights violations between the oppressed and the non-oppressed is permissible, "if this and only this can be expected to lead to a situation in which rights are more adequately respected" . In those and only those circumstances, terrorism would be permissible, since it centrally violates the right to personal safety. Hence NNT. The idea, then, is that VDP implies that where there is a systematic imbalance in the distribution of severe rights violations between one group and another , and where only a transition which involves a sharing of proportionate rights violations between the oppressed and the non-oppressed can be expected to achieve a situation in which rights are more adequately respected , then terrorism aimed at the oppressors and in conformity with the Uniqueness condition is permissible. (shrink)

This major addition to Ideas in Context examines the development of natural law theories in the early stages of the Enlightenment in Germany and France. T. J. Hochstrasser investigates the influence exercised by theories of natural law from Grotius to Kant, with a comparative analysis of the important intellectual innovations in ethics and political philosophy of the time. Hochstrasser includes the writings of Samuel Pufendorf and his followers who evolved a natural law theory based on human sociability and reason, fostering (...) a new methodology in German philosophy. This book assesses the first histories of political thought since ancient times, giving insights into the nature and influence of debate within eighteenth-century natural jurisprudence. Ambitious in range and conceptually sophisticated, Natural Law Theories in the Early Enlightenment will be of great interest to scholars in history, political thought, law and philosophy. Natural Law Theories in the Early Enlightenment has been selected as the winner of the annual Morris D. Forkosch Prize for the best book in intellectual history published in 2000. (shrink)

The standard approach to protecting privacy in healthcare aims to control access to personal information. We cannot regain control of information after it has been shared, so we must restrict access from the start. This ‘control’ conception of privacy conflicts with data-intensive initiatives like precision medicine and learning health systems, as they require patients to give up significant control of their information. Without adequate alternatives to the control-based approach, such data-intensive programmes appear to require a loss of privacy. This paper (...) argues that the control view of privacy is shortsighted and overlooks important ways to protect health information even when widely shared. To prepare for a world where we no longer control our data, we must pursue three alternative strategies: obfuscate health data, penalise the misuse of health data and improve transparency around who shares our data and for what purposes. Prioritising these strategies is necessary when health data are widely shared both within and outside of the health system. (shrink)

Recent advances in synthetic biology have made it possible to revive extinct species of animals, a process known as ‘de-extinction’. This paper examines two reasons for supporting de-extinction: the potential for de-extinct species to play useful roles in ecosystems; and human valuing of certain de-extinct species. I focus on the particular case of passenger pigeons to argue that the most critical challenge for de-extinction is that it entails significant suffering for sentient individual animals. I also provide reasons to take existence (...) value, or valuing the mere the fact that a species exists, into consideration in debates over de-extinction. (shrink)

It has been hypothesized that psychedelic experiences elicit lasting psychological benefits by altering narrative selfhood, which has yet to be explicitly studied. The present study investigates retrospective reports (n = 418) of changes to narrative self that participants believe resulted from, or were catalysed by, their psychedelic experience(s). Responses to open-ended questions were analysed using inductive and deductive thematic coding and interpreted within agent-centred approaches to development and well-being. Themes include decentred introspection, greater access to self-knowledge, positive shifts in self-evaluation (...) processes, greater psychological and behavioural autonomy, and enhanced connectedness with others and the world. While this explorative qualitative study offers some initial support for the explanation that changes to narrative self are a cornerstone of psychedelics' therapeutic and transformative potential, methodological and recruiting limitations preclude the ability to make objective claims and generalizations. Future scientific research is necessary to further elucidate this hypothesized mechanism. (shrink)

Gilles de la Tourette syndrome (TS) is a childhood neuropsychiatric disorder characterised by the presence of motor and vocal tics. Patients with malignant TS experience severe disease sequelae; risking morbidity and mortality due to tics, self-harm, psychiatric comorbidities and suicide. By definition, those cases termed ‘malignant’ are refractory to all conventional psychiatric and pharmacological regimens. In these instances, deep brain stimulation (DBS) may be efficacious. Current 2015 guidelines recommend a 6-month period absent of suicidal ideation before DBS is offered to (...) patients with TS. We therefore wondered whether it may be ethically justifiable to offer DBS to a minor with malignant TS. We begin with a discussion of non-maleficence and beneficence. New evidence suggests that suicide risk in young patients with TS has been underestimated. In turn, DBS may represent an invaluable opportunity for children with malignant TS to secure future safety, independence and fulfilment. Postponing treatment is associated with additional risks. Ultimately, we assert this unique risk-benefit calculus justifies offering DBS to paediatric patients with malignant TS. A multidisciplinary team of clinicians must determine whether DBS is in the best interest of their individual patients. We conclude with a suggestion for future TS-DBS guidelines regarding suicidal ideation. The importance of informed consent and assent is underscored. (shrink)

The title of T. J. Mawson's article was incorrectly given as “God's creation of mortality” on the Contents page and cover. The publishers would like to apologise to the author and their readers for this error.

Costly signalling theory has become a common explanation for honest communication when interests conflict. In this paper, we provide an alternative explanation for partially honest communication that does not require significant signal costs. We show that this alternative is at least as plausible as traditional costly signalling, and we suggest a number of experiments that might be used to distinguish the two theories.

Amongst other countries, the Netherlands currently allows euthanasia, provided the physician performing the procedure adheres to a strict set of requirements. In 2016, Second Chamber member Pia Dijkstra submitted a law proposal which would also allow euthanasia without the reason necessarily having any medical foundation; euthanasia on the basis of a completed life. The debate on this topic has been ongoing for over two decades, but this law proposal has made the discussion much more immediate and concrete. This paper considers (...) the moral permissibility of Pia Dijkstra’s law proposal, focusing on the ethics of the implementation Dijkstra describes in her proposal. I argue that, at present, Dijkstra’s law proposal is unsuitable for implementation, due to a number of as of yet unaddressed problems, including the possible development of an ageist stigma and undue pressure on the profession of end-of-life coordinator. Perhaps adequate responses can be conceived to address these issues. However, the existence of a radically different, yet currently equally unacceptable position regarding the implementation of euthanasia for a completed life as proposed by fellow party member Paul Schnabel suggests it may be difficult to formulate an ethically acceptable implementation for this, in principle, ethically acceptable concept. (shrink)

Most philosophers and psychologists who have explored the psychology of climate change have focused only on motivational issues—getting people to act on what morality requires of them. This is misleading, however, because there are other psychological processes directed not at motivation but rather our ability to grasp the implications of climate change in a general way—what Stephen Gardiner has called the ‘grasping problem’. Taking the grasping problem as my departure point, I draw two conclusions from the relevant psychological literature: 1) (...) ethicists and policy makers should focus less on changing individuals’ behaviors and more on changing policy; and 2) even though solutions to climate change must come at the level of policy, progress on this front will be limited by incompatible moral norms. (shrink)

Some philosophers have thought that life could only be meaningful if there is no God. For Sartre and Nagel, for example, a God of the traditional classical theistic sort would constrain our powers of self-creative autonomy in ways that would severely detract from the meaning of our lives, possibly even evacuate our lives of all meaning. Some philosophers, by contrast, have thought that life could only be meaningful if there is a God. God and the Meanings of Life is interested (...) in exploring the truth in both these schools of thought, seeking to discover what God could and couldn't do to make life meaningful (as well as what he would and wouldn't do). Mawson espouses a version of the 'amalgam' or 'pluralism' thesis about the issue of life's meaning – in essence, that there are a number of different legitimate meanings of 'meaning' (and indeed 'life') in the question of life's meaning. According to Mawson, God, were he to exist, would help make life meaningful in some of these senses and hinder in some others. He argues that whilst there could be meaning in a Godless universe, there could be other sorts of meaning in a Godly one and that these would be deeper. (shrink)

The celebrated western humanist tradition has its source in its early philosophical texts. In The Gift of Death, Derrida analyses the history of the emergence of ethical responsibility in the so-called Religions of the Book such as Judaism, Christianity, and Islam. While the humanist project helped itself through its conquest of the human sphere, it has served to upset the ecological balance and jeopardize sustainability. While searching for an inclusive vision for a sustainable, ethical perspective, Dōgen’s philosophy gains relevance in (...) the contemporary context. (shrink)

This careful and engaging introduction to Aristotle equips readers of ancient philosophy and classics with an intellectual map that will guide their further exploration within the terrains of Aristotelian philosophy and logic. The book does not seek to provide a verdict or to persuade the reader of the usefulness of Aristotle's ideas. Instead it offers a comprehensive introduction to key philosophical areas while situating the reader within the ongoing intellectual debates on Aristotle's significance and relevance. Crowley's book allows an overview (...) of Aristotle's contributions and includes discussions on the Organon, the epitome of his logical treatises, his works on biology, nature and causation, metaphysics, citizenship, ethics and eudaimonia. The book is a valuable tool for readers interested in becoming acquainted with the work of Aristotle but most importantly for those who are keen to understand his many interpretations. (shrink)